Patient Registries See Promise and Challenges Ahead

Physician-driven registries adapt to a changing health system

In a healthcare landscape that continues to stress quality and cost, patient registries used to monitor safety and track outcomes are now being used in new ways: as decision-making aids, risk-adjustment tools, and alternatives to public reporting requirements.

MedPage Today spoke with health experts about the future of patient registries and the challenges ahead.

The National Neurosurgery Quality Outcomes Database (N2QOD), developed by the NeuroPoint Alliance, an offshoot of the American Association of Neurological Surgeons (AANS), is one physician-driven registry poised to change the way neurosurgeons conduct their care.

The alliance's lumbar spine module includes around 8,000 patients and tracks patients for up to 12 months, gathering records from private practices and academic centers across the country. Each participating group receives its own data and can benchmark its performance against a universal data set. Just as important, the registry tracks which types of patients see positive outcomes after surgery.

Early data from the N2QOD found that 85% of patients benefit from spinal surgery, while around 15-20% of patients had complications, including readmissions after surgery, Robert Harbaugh, MD, the president of NeuroPoint Alliance and past president of the American Association of Neurological Surgeons, told MedPage Today.

Anthony "Tony" Asher, MD, director of the N2QOD, told MedPage Today, "Frankly, we are beginning to find some areas where maybe we are not adding value the way we should."

Initial N2QOD results showed that patients with a high body mass index (BMI), smoking, and diabetes appeared to have poorer outcomes after spinal surgery.

Ultimately, the alliance plans to build risk-calculators where a surgeon can simply plug in patient characteristics and the operation type and determine how similar patients fared.

Such data implicitly invites change both in patient selection and pre-surgery interventions. Harbaugh said, "If you can get those [risk factors] under control, or get people to quit [smoking], that would really improve the outcomes of surgery."

He continued, "Anything we can do to avoid operating on people who aren't going to get better, to avoid some of the complications and readmissions, would certainly improve the value of our care, and that's what we're shooting for."

Data also helps surgeons manage patient expectations.

Asher said, using such a tool, a surgeon might say to a patient, "We think it's reasonable to consider surgery... because there's a better than even chance that you would have a very substantial improvement."

A risk calculator might also indicate that surgery is not recommended.

In this case, Harbaugh said, "As disappointed as a patient is when he's told that surgery is not going to be a benefit, that patient is even more disappointed, after he's gone through the risks and the expense, and the pain of the surgery and recovery and isn't better."

Many Uses of Registries

In 1989, the Society of Thoracic Surgeons developed a registry widely considered the gold standard. The STS Adult Cardiac Surgery database includes 5.5. million surgical records from more than 90% of clinicians involved in cardiac surgery across the country, according to its website.

In a healthcare system that is increasingly concerned with the value of care, the Society gives physicians the option to publicly report their data. They also incorporate the collection of registry data in maintenance of certification programs.

"Registries, when they are done well, are learning systems," said David Blumenthal, MD, president of the Commonwealth Fund, a left-leaning think tank based in Washington and New York.

They allow you to match the right patients to the right treatment, identify high performers so that weaker performers can learn from them, and help target promising research areas, he added.

The way surgeons practice has been shaped by tiny improvements that have accumulated over the years and registries have helped spur those changes.

Partnering With Government

In 2012, as part of a then Sustainable Growth Rate (SGR) formula bill, a mechanism used to determine Medicare payment, the Centers for Medicare and Medicaid Services (CMS) created a qualified clinical data registry pathway that would enable clinicians to satisfy the public reporting standards of the physician qualified reporting systems (PQRS) program by sharing registry data. In doing so, they avoided penalties for not reporting.

That legislation served as a catalyst for specialty societies that began to develop more and more registries, said a spokesperson for the National Quality Forum (NQF), a group that vets quality reporting measures.

In July, CMS recognized the N2QOD as a qualified clinical data registry.

As a representative for the National Quality Forum explained, government accountability programs started off by using financial incentives to tempt physicians to report their data. Now there are penalties for not reporting. And CMS is beginning to implement value-based systems that employ registries.

While many specialty societies may want to keep a wall between their data and government regulation, Blumenthal said that doesn't seem realistic. "I think if the data is available and meaningful, it ultimately will or could very well be used for rewarding quality or value. I think that's part of the reality of the era that we live in."

However, he noted that for as long as specialty databases remain voluntary, such a strategy would be impractical.

Harbaugh said he's concerned that adding a punitive component such as financial penalties to registries may backfire.

"The unintended consequence of [fining doctors] is people will avoid operating on patients who might really benefit from surgery but who have higher complication rates."

Harbaugh cited the example of the state-wide public reporting requirement in New York, that he viewed as harmful. Many higher-risk patients who could have been helped by surgery struggled to find a surgeon willing to operate on them.

"You suddenly saw a lot of patients being referred out of state," Harbaugh said.

The NQF spokesperson said that much has changed in public reporting since that legislative action, over a decade ago. Today, we have better ways to adjust for clinical acuity, she noted. In other words, the system acknowledges that an elderly patient who has diabetes and heart disease and gets triple bypass surgery may not fare as well as a healthy 39-year-old undergoing the same procedure.

Other factors outside a physicans control -- a patient's ability to afford post-surgery medications, or access to transportation to see a primary care doctor -- could also influence outcomes.

While adjustment for socioeconomic factors were barred by the forum until recently, the organization has temporarily -- for 2 years -- lifted that ban and are considering whether to make such adjustments permanent, said the representative.

That so many specialty societies have developed their own registries is to be applauded, Blumenthal said, and "it would be unfortunate if that professional motivation were undermined by heavy-handed government regulation." Yet, if the profession neglected a potential medical concern, letting the government, a payer, or other third party intervene and require data collection seems necessary, he noted.

Challenges Ahead

Making registries more transparent could influence a patient's choice of clinician.

Blumenthal supports this kind of transparency but noted, "It's a matter of timing." Rushing too quickly to public reporting might discourage specialty societies from developing their own databases.

Another challenge to transparency is patient health literacy. Don Goldmann, MD, chief medical and scientific officer at the Institute for Healthcare Improvement (IHI), told MedPage Today that studies have shown that some very basic metrics are still "inscrutable to patients."

"It's not a bad idea to be transparent, but it's incumbent on us not to be stupid about it," he said.

Blumenthal said the cost of registries is also a limitation. Analyzing, assessing, and reporting registry data costs money and most specialty societies bear those costs on their own. As a result, such databases are more common among better paid physician groups. Lower paid clinicians, such as pediatricians, may be less inclined to bear such a tax.

Asher said the AANS is sensitive to costs and continually strives to reduce them.

"I do know that if physicians do not take the lead on collecting this information, making sense of it, and using it to power intelligent changes in healthcare someone else will."

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